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LE BERCEAU ROSE & BLEU
IS ORGANISING FOR XAVIER
A Spaghetti Party: Saturday 17th September 2005 at 7.00pm
St Lambert Church: Salle Chalom, rue Madyol n°5 – 1200 Brussels
Xavier is an adorable 33 month old little boy who suffers from late-onset Krabbe’s Disease, a very rare genetic illness that is little known in Europe and which is always terminal. You can read Xavier’s story on this website created by his maternal grandmother.
The only therapy possible to stop the progression of the disease is a transplant. Following ten days of intensive chemotherapy, on 17 February 2005 Xavier successfully underwent, at the saint-Luc University Clinics, a cord blood stem cell transplant which Professor Vermylen had very carefully selected. It was a very good HLA match.
Finally, after eight long weeks, Xavier returned home where he is living in an extremely healthy environment and although he is taking lots of medication, the risk of infection is always present as his immune system is deficient. Since his return, Xavier has been to the child haematology department of St Luc’s outpatients department every week for a blood test, to monitor his condition and to be transfused. It is only recently that he has been going every fortnight but his white blood cell count has fallen.
Xavier can’t go to public places or have any contact with other children, which is why he also has to be kept in isolation from his little brother. Furthermore, when 11 month-old Alexander is ill, he has to be taken away from the house. This has already happened 3 times since Xavier’s return home. At 15 months, Alexander will receive his first life vaccine and therefore will be kept way from his brother for a month. Every day the house his cleaned thoroughly whit a powerful disinfectant product, Xavier has his own crockery, visitors are down to a minimal and safety measures are applied for those who have to be in contact with him.
Although the immediate concern was to save Xavier, we now need to concentrate on monitoring the illness, minimising post-transplant complications, which can last for several years, considering a possible return to the States where more is known about the illness. But above all, we need to make the period in isolation bearable, whilst giving the children a good quality of life. In order to do that we need to create a structured environment around them which will enable them to develop like other children of their age without being too acutely aware of the inevitable inconvenience of isolation.
In order to counter the bad effects of the illness diagnosed by Dr Nassogne, his neuro-paediatrician – who is still monitoring him closely – Xavier has five weekly physiotherapy sessions with Véronique Lepape and Florence Henkinet and three weekly speech therapy sessions with Nathalie Thomas, who is doing all she can to develop his speech.
This September Xavier is old enough to go to nursery, and the ideal supervision for him would be to employ a child minder for the daily care of the children and a teacher so that Xavier can benefit from a few hours a week of appropriate education through play and so his mum can go back to work without having to worry about them.
Sofia, Maria and Elena will prepare a delicious spaghetti dish for you, followed by a dessert
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